Published online June 1, 2006
PEDIATRICS
Vol. 117
No. 6
June 2006, pp.
2277-2278
(doi:10.1542/peds.2005-2886)
What Will It Take to Improve Very Low Birth Weight Follow-up Care?
Linda L. Wright, MD
Center for Research for Mothers and Children, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland
Abbreviations: VLBW—very low birth weight
The study by Wang et al1 in this issue of Pediatrics highlights the lack of quality indicators for the neurodevelopmental follow-up of very low birth weight (VLBW) survivors. It is an excellent example of the effort required to develop explicit process criteria to evaluate the quality of VLBW follow-up care. The authors systematically reviewed 437 articles on clinical predictors, screening, and treatment for VLBW children by searching the PubMed database, screening articles by prominent authors in the field and articles cited in the Agency for Healthcare Research and Quality evidence report Criteria for Determining Disability in Infants and Children: Low Birth Weight,2 and reviewing the clinical practice guidelines for follow-up care of VLBW infants. They drafted a set of 96 potential quality-of-care indicators in 5 content areas (general care; physical health; vision, hearing, speech, and language; developmental behavioral assessment; and psychosocial assessment), which a panel of 10 experts rated for validity, feasibility, and quality of evidence. Validity and feasibility were rated on a 9-point scale (1, low; 9, high). The quality of evidence was rated by using the Canadian Task Force on Periodic Health Examination system,3 which ranks quality of evidence from data generated from randomized, controlled trials as level I, data from cohort or case-control studies and nonrandomized, controlled trials as level II, and data based on expert opinion or descriptive studies as level III. The final set of 70 indicators included 9 indicators for specific aspects of physical health that were not included in the original list from the extensive literature review.
There are some surprises here: among the many screening tests, diagnoses, examinations, referrals, and treatments that VLBW infants receive in follow-up, only 70 fulfilled the criteria for quality indicators and only 8 were considered interventions. Among the 70 quality-of-care indicators, 3 results stand out: (1) only 2 indicators were supported by level I evidence, 1 therapeutic intervention (Synagis for infants with chronic lung disease) and 1 referral (for treatment within 1 month for any ophthalmologic morbidity before 3 years); (2) only 5 indicators were supported by level II evidence (a summary of the hospital course in the primary care provider's medical chart; counseling/screening for sleep position to prevent sudden infant death syndrome and tobacco as an environmental hazard; examining/plotting head circumference at every visit until 2 years; and referring for parental behavioral concerns within 2 months); and (3) an astounding 90% of the remaining indicators, including 3 of the 4 treatment interventions (supplemental iron; rehabilitation by 6 months for nonconductive hearing loss; and physical or occupational therapy within 2 months of a qualifying neuromotor examination), were based on level III evidence. This is a disappointing record for a field that has devoted so much energy to developing evidence-based care and practice guidelines.
These results do not reflect overly stringent inclusion criteria—indicators with a median feasibility score as low as 4 were included—many of which could be achieved by a good clinic manager. Part of the reason for the lack of quality indicators based on level 1 evidence may be the choice of indicators; for example, recording of immunization status is an indicator based on level III evidence rather than the provision of individual immunizations, which is supported by level I evidence. This also seems to reflect an attempt to restrict the indicators to those focused specifically on the neurodevelopmental follow-up of VLBW infants. Because VLBW infants also need routine care, readers are advised to consult Bright Futures4 or Quality of Care for Children and Adolescents5 for recommendations for the content of pediatric care to supplement the indicators identified in the Wang et al study.
The lack of evidence-based interventions to address the many problems faced by this very high-risk population and their families should be a wake-up call to all who care for these infants, especially in view of the plasticity of the developing brain and the recent evidence of improving cognitive function over time in very preterm infants who do not have neurosensory impairment.6,7 There has been far too little attention focused on designing and testing interventions to improve the long-term outcome of VLBW children. Despite the paucity of effective interventions, these quality-of-care indicators will be useful for heath care providers planning follow-up care programs for VLBW infants and anyone evaluating the quality of VLBW follow-up programs. They represent an important supplement to the information provided in the "Follow-up Care of High-Risk Infants" workshop,8 which defined optimal methods to assess the outcome of high-risk infants, identified gaps in knowledge about neurodevelopmental outcome of high-risk infants, and prioritized research efforts in response to these gaps.
Wang et al attribute the fact that there are no previously published studies on quality of care for VLBW infants after discharge to the lack of quality-assessment instruments for VLBW neurodevelopmental follow-up and the challenge of tracking their complex care. The lack of quality-of-care indicators is a more general problem in pediatrics, where assessment of quality of care has lagged behind similar efforts in internal medicine and surgery. The authors point out the need for educating providers in quality-improvement techniques and developing measurement systems that have the potential to improve health care for VLBW children. A good place to start is the series of excellent short articles on the quality of health care published in the New England Journal of Medicine.9–14 The authors of this series argue that physicians must master the substantive issues that underlie the current discussions about quality-of-care concepts and be involved in the measurement and management of quality to improve quality. The series reviews the major technical concepts and issues pertinent to current discussions about quality of care, places those discussions in a political and social context, and provides some guidance on how changes in techniques for measuring and improving quality may affect doctors and patients over the next decade.
As the number of VLBW infants at risk for neurodevelopmental morbidities and the cost of their care increase, it is crucial that we provide for long-term follow-up of all infants enrolled in randomized trials and improve standardization of methodologies and data collection. It is likely that these and subsequent quality-of-care standards will help achieve these goals by providing a means to measure quality, identify factors that contribute to adherence to recommended care, and suggest new interventions and policies to improve outcomes.
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FOOTNOTES
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Accepted Nov 28, 2005.
Address correspondence to Linda L. Wright, MD, Center for Research for Mothers and Children, National Institute of Child Health and Human Development, National Institutes of Health, Building 6100, Room 4B05J, Bethesda, MD 20815. E-mail: wrightl{at}mail.nih.gov
The author has indicated she has no financial relationships relevant to this article to disclose.
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